Re: New Diagnosis of DS

[Guest guest]

Hi Torry,

So glad to hear everything went so well for you today! I am thinking of your

friend, as she is processing the recent diagnosis of her little girl.

I could write a book about our last six years with Sara...it would be flowery

in some parts, when I explained how she has shown me a love I never thought

possible or when I would tell of the very simple things that have become our

rituals, such as dancing or doing hand motions to our favorite songs or how

fun it is to watch her play with her dollies or dress-up in pretty clothes.

It would be funny in some parts, such as when I shared how recently, she

wanted me to look for a sliver in her foot and I told her I could not see a

thing in her foot and she told me in a full sentence, " Mom, put your glasses

on. "

It would be sad in some parts...like the time a little girl offered everyone

a ring at preschool, but her, because " she's still a baby, she would lose

it. "

It would express concern in parts...the times I was so concerned she could

not breath with upper respiratory illness that I would take her to the E.R.

in the middle of the night.

It would tell of how exhausted I have been, with constant disrupted sleep.

It would tell of worry about her future--how will it be for her? How even

will middle school be for her? What will the relationship be with her twin

brother and other brother?

Most of all my book would tell someone who is just new to the world of Down

Syndrome of the incredible caring people they will meet along the way, people

who most likely would not have touched their lives otherwise; I would tell

how our children need to be treated just like any child, loved and

disciplined; and I would share that Sara is a happy child, with moments of

stubborness and crankiness like any child.

I know the process of acceptance is different for each Mom and Dad--This site

is a wonderful place for expressing thoughts and feelings--many of us so

understand.

Marcia

Mom to Sara (DS) and (5-3/4) and Lucas 9

[Guest guest]

Torry: Just continue to be her friend. Don't let the

shock/sadness/anger of the confirming diagnosis

overshadow the fact that this is a brand new baby,

first and foremost. Celebrate the new addition to the

family. Point out how cute she is, how she has her

daddy's nose, her mommy's smile, etc. There's lots of

great websites out there, a few of my favorites are

Sara's website, Being into Down Syndrome (or BIDS)

(www.dsyndrome.com) Down Syndrome for New Parents

(www.downsyn.com), and Unomas, (www.unomas21.com).

In addition, there's tons of clubs on like

Reflections of Angels (ROA) at

www.clubs./clubs/reflectionsofangels. (There

are a few others but they are unlisted and require an

invitation to join. If you or your friend would be

interested, let me know and I'll send you

invitations.)

All of the above websites have bulletin boards,

forum's or message boards. The people there are kind,

wonderful supportive people and, like us here at

multiples, would love to help your friend out.

Let us know how she is.

Judi-Mom to Sam & , Almost 4! Identical Twins

--- tlcesq@... wrote:

> My dearest friend, , learned this week that

> their 3-week-old

> daughter has DS. Even with the initial shock of the

> " preliminary

> diagnosis " given at the hospital after birth, this

> recent news is a

> traumatic development for her family, one I am sure

> they were hoping

> was " just a mistake " on the hospital's part.

>

> You have all been so giving of your support and

> information to me in

> my quest for information. Is there anything you can

> add that I might

> forward to her, to help her through this tough time?

>

> Torry

>

>

__________________________________________________

[Guest guest]

Very simlpy, in my shock, grief and saddness, what I remember, my

dearest and best friend said to me on the phone while i lay in my

hospital bed was, " well, she's our's! " When I wasn't ready to except my

own daughter{who was in ICU at the time in another hosp}my friend

although also saddened, excepted her. I'll never forget those words from

her, it greatly comforted me. Alot of exceptence goes along way!

Gail.........Bobby 6 1/2, Jillian 4, and Tara{DS} 18+months

>

> Torry: Just continue to be her friend. Don't let the

> shock/sadness/anger of the confirming diagnosis

> overshadow the fact that this is a brand new baby,

> first and foremost. Celebrate the new addition to the

> family. Point out how cute she is, how she has her

> daddy's nose, her mommy's smile, etc. There's lots of

> great websites out there, a few of my favorites are

> Sara's website, Being into Down Syndrome (or BIDS)

> (www.dsyndrome.com) Down Syndrome for New Parents

> (www.downsyn.com), and Unomas, (www.unomas21.com).

> In addition, there's tons of clubs on like

> Reflections of Angels (ROA) at

> www.clubs./clubs/reflectionsofangels. (There

> are a few others but they are unlisted and require an

> invitation to join. If you or your friend would be

> interested, let me know and I'll send you

> invitations.)

> All of the above websites have bulletin boards,

> forum's or message boards. The people there are kind,

> wonderful supportive people and, like us here at

> multiples, would love to help your friend out.

> Let us know how she is.

> Judi-Mom to Sam & , Almost 4! Identical Twins

> --- tlcesq@... wrote:

> > My dearest friend, , learned this week that

> > their 3-week-old

> > daughter has DS. Even with the initial shock of the

> > " preliminary

> > diagnosis " given at the hospital after birth, this

> > recent news is a

> > traumatic development for her family, one I am sure

> > they were hoping

> > was " just a mistake " on the hospital's part.

> >

> > You have all been so giving of your support and

> > information to me in

> > my quest for information. Is there anything you can

> > add that I might

> > forward to her, to help her through this tough time?

> >

> > Torry

> >

> >

>

> __________________________________________________

>

[Guest guest]

Be her friend, the best help for me was the nurses in the

NICU that told me if I wanted to give my son up for adoption

they wanted to adopt him. Just knowing that someone else

accept him even though he had DS help to show me things were

going to be ok.

I know you have been given a lot of information on books to

read that might be helpful. I would like to pass one piece of

advice that Tyler's special educator keeps reminding me is that

almost if not all books that are currently in publication on

children with DS are based on children who were institutionalized.

What our kids will be able to accomplish is not completely know since

they are getting so much more in the way of special education,

physical therapy, OT, speech, etc. There have been some articles

published profiling children who are in college, writting books,

running for public office, etc. Most of these children did not start

as early as they start today with education. I have mentioned the

article published by Family Circle Magazine last Feb/Mar 2000, I am

also including an article that was published in a newsletter I get

children with DS can live very normal lives as adults. They may even

be the one who is the care taker of another as the following article

shows.

Sometimes Independence Requires Help

© The State Journal-Register, Springfield, IL., Sept. 17, 2000

Kathy Conour and Braun's thing is independence. They forged a

partnership and built their lives with that foremost in their minds.

Whenever

that independence is threatened, it is a frightening experience.

Kathy

has

cerebral palsy. has Down syndrome. Kathy and got together

more than 30 years ago, determined to help each other stay out of any

institutional living arrangement. They had each had a taste of that

life and

vowed never to go back. Their relationship works. They own their own

home, they travel, they live their lives on their own terms. They

refuse to

depend upon the kindness of strangers, but they will accept help from

friends.

That help was needed when had carpal tunnel surgery in August.

In

their relationship, does the heavy lifting - literally. For

most

of the 30

years, she lifted Kathy out of bed every morning and back into bed at

night.

After the operation, could not use her left hand to cook food,

wash

clothes, write checks or to carry anything. She could not drive for a

week,

which was possibly the biggest inconvenience of all. Two people used

to

mobility were now stuck at home.

When neighbors offered to help, the offer was gratefully accepted.

" We all just put our heads together, " says , " and it worked out. "

Dolores Krause stayed with Kathy while underwent surgery. After

came home, Dolores helped cook meals. A neighbor, Beth

Antonacci,

took to the hospital and stayed with her during surgery. Jill

Thiel,

another neighbor, helped get Kathy into bed. helped

take their cat in for a shot.

None of us is truly independent. We all need other people. It isn't

always easy to accept that fact, especially for someone like Kathy

and

,

for whom making it on their own is the fiber of their lives. " As you

know, "

Kathy e-mailed, " this is more than just a 'feel-good' article to my

disabled

friends and me, who know we have to fight for our right to live as

others. "

Not every person can do what Kathy and are doing. Luckily for

them,

they have enough money and enough ability to make it on their own. In

a

week or so, is expected to be able to use her left hand

normally

again.

When she recovers, she and Kathy will have survived one more threat

to

their

independence. Another crisis will be passed, and they will go their

own way

once again.

(Editor's Note: This is just a small excerpt. To read the entire

article,

go to http://www.sj-r.com/news/00/09/17/c.html)

Katy mom to 31/2 and twins and Tyler(DS) 11months

> My dearest friend, , learned this week that their 3-week-old

> daughter has DS. Even with the initial shock of the " preliminary

> diagnosis " given at the hospital after birth, this recent news is a

> traumatic development for her family, one I am sure they were

hoping

> was " just a mistake " on the hospital's part.

>

> You have all been so giving of your support and information to me

in

> my quest for information. Is there anything you can add that I

might

> forward to her, to help her through this tough time?

>

> Torry